An artist with epidermolysis bullosa (EB) is among the 10 creators selected as the winners of the 2026 RARE Artist program. The program is run by the Rare Foundation, an advocacy group that works to raise awareness and promote legislation to improve the lives of people with rare…
Discussion
For National Family Caregivers Month, I took the opportunity to interview my son Jonah about his care experience as a teenager living with epidermolysis bullosa. PW: What’s the hardest part about needing caregivers as a teenager? JW: I would say it just limits me in general. I’m always having…
Discussion
Recruitment is now underway in a new Phase 3 clinical trial testing SD-101, an experimental cream designed to promote wound healing in people with epidermolysis bullosa (EB). The Phase 3 SD-007 study (NCT07482787) is open to children, ages four weeks through 12 years, who have EB simplex,…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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